Published literature
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview studyCoombes L, Braybrook D, Roach A, Scott H, Harðardóttir D, Bristowe K, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Harding R · Eur J Pediatr · 2022
A Feasibility Study Examining Storytelling Through Music with Bereaved Parents of Children with Cancer (RP212)Phillips C, Morris S, Rodriguez E, Woods H, Hebdon M, Choi E, Morgan B, Morris J, Jorgensen T, Ravandi D, Moorjani D, Kesler S, Umberson D · Journal of Pain and Symptom Management · 2024
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support InterventionMichelson K, Frader J, Charleston E, Rychlik K, Aniciete D, Ciolino J, Sorce L, Clayman M, Brown M, Fragen P, Malakooti M, Derrington S, White D · Pediatr Crit Care Med · 2020
Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative studyPiette V, Dombrecht L, Deliens L, Cools F, Chambaere K, Goossens L, Naulaers G, Laroche S, Cornette L, Bekaert E, Decoster P, Beernaert K, Cohen J · Palliat Med · 2022
Bereaved parents' perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative studyCrowe A, McCauley R, Corcoran Y, Reid J, Price J, Kiernan G, Courtney E, McConnell T, McNeilly P, Lambert V · BMC Palliat Care · 2025
Caregiver Preferences for AI-Supported Telemedicine in Pediatric Palliative Care: A Discrete Choice ExperimentGodoy Junior C, Penarrubia-San-Florencio L, Ricart S, Vilarrubi S, Roure M, Ruiz-Herguido C, Valls-Esteve A, Pilli L, Uyl-de Groot C, Redekop W, Kirsten van Deen W · Journal of palliative care · 2026
Caregiver Values and Preferences Related to Surgical Decision-making for Children with Medical ComplexityLin J, Devereaux T, Simon T, Kaphingst K, Zhu A, Narayanan U, Berry A, Eppich K, Stoddard G, Smith J, Andras L, Heflin J, Keenan H, Asch S, Fagerlin A · The Journal of pediatrics · 2024
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carersCoombes L, Braybrook D, Hardardottir D, Scott H, Bristowe K, Ellis-Smith C, Fraser L, Downing J, Bluebond-Langner M, Murtagh F, Harding R · Palliative Medicine · 2024
Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and familiesKaye E, Woods C, Kennedy K, Velrajan S, Gattas M, Bilbeisi T, Huber R, Lemmon M, Baker J, Mack J · British Journal of Cancer · 1089
Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based studySurkan P, Sakyi K, Strobino D, Mehra S, Labrique A, Ali H, Ullah B, Wu L, Klemm R, Rashid M, West K, Christian P · Ann Epidemiol · 2016
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family MembersCoombes L, Harðardóttir D, Braybrook D, Roach A, Scott H, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Patient · 2023
Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectivesThibault L, Bourque C, Gaucher N, Marano M, Couture K, Saad L, Chartrand C, Fregeau S, Dore-Bergeron M, Fiscaletti M, Kleiber N · Paediatrics and Child Health (Canada) · 2024
Experiences in Coping with Stress-A Qualitative Study of Family Caregivers of Children with Medical ComplexityLayshock M, Porter A, Bogetz J, McLachlan L, Weill S, Rosenberg A, Winger J, Houtrow A, Noll R, Schenker Y, Yu J · Children (Basel) · 2024
Experiences of medical traumatic stress in parents of children with medical complexityDewan T, Birnie K, Drury J, Jordan I, Miller M, Neville A, Noel M, Randhawa A, Zadunayski A, Zwicker J · Child: Care, Health and Development · 2023
Experiencing acute genomic care: perspectives from parents in the neonatal and paediatric intensive care units towards rapid genomic sequencingMackley M, Dickson M, Szuto A, Anderson J, Chitayat D, Hayeems R, Mendoza-Londono R, Ng E, Offringa M, Wang Y, Ly L, Chad L · European Journal of Human Genetics · 2026
Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory studyActis Danna V, Lavender T, Laisser R, Chimwaza A, Chisuse I, Kasengele C, Kimaro D, Kuzenza F, Lyangenda K, Mwamadi M, Shayo H, Tuwele K, Wakasiaka S, Bedwell C · Women & Birth · 2023
Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science reviewNicholas Dionne-Odom J, Hooker S, Bekelman D, Ejem D, McGhan G, Kitko L, Str�mberg A, Wells R, Astin M, Metin Z, Mancarella G, Pamboukian S, Evangelista L, Buck H, Bakitas M, Hooker S, Metin Z, Pamboukian S, Buck H · Heart Failure Reviews
Family Conferences in Prenatal Palliative CareBernardes L, Oliveira F, Jesus R, Benute G, Gibelli M, Nascimento N, Bolibio R, Barbosa T, Setubal M, Gomes A, Rocha L, Rosa G, Francisco R · Journal of palliative medicine. · 2020
Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional SurveyChow A, Pugliese M, Tessier L, Chakraborty P, Iverson R, Coyle D, Kronick J, Wilson K, Hayeems R, Al-Hertani W, Inbar-Feigenberg M, Jain-Ghai S, Laberge A, Little J, Mitchell J, Prasad C, Siriwardena K, Sparkes R, Speechley K, Stockler S, Trakadis Y, Walia J, Wilson B, Potter B · The Patient · 2021
Feasibility, acceptability and potential efficacy of the pediatric family-based dignity therapy for children with advanced cancer: A pilot studyWu Y, Tian Z, Deng C, Yan J, Huang K, Wang Z, Zhou X, Liu H, Cai S, Zheng R, Guo Q · Asia-Pacific Journal of Oncology Nursing · 2025
Goals of Care Rated by Parents of Children Receiving Pediatric Palliative Care: A Cohort Study Over Two Years (RP409)Feudtner C, Beight L, Boyden J, Hill D, Hinds P, Johnston E, Friebert S, Hays R, Kang T, Hall M, Nye R, Wolfe J · Journal of Pain and Symptom Management · 2022
Guidance on forgoing life-sustaining medical treatmentWeise K, Okun A, Carter B, Christian C, Katz A, Laventhal N, MacAuley R, Moon M, Opel D, Statter M, Davies D, Dell M, Diekema D, Klipstein S, Elster N, Rivera F, Feudtner C, Boss R, Hauer J, Humphrey L, Klick J, Linebarger J, Parker S, Lord B, Imaizumi S, Guinn-Jones M, Flaherty E, Gavril A, Idzerda S, Laskey A, Legano L, Leventhal J, Fortson B, MacMillan H, Stedt E, Hurley T · Pediatrics · 2017
Impact of Specialized Pediatric Palliative Care on Bereaved Parents' Mental and Physical HealthDelgado-Corcoran C, Meeks H, Wawrzynski S, Markovitz B, Harman B, Masih J, Li K, Harousseau M, Moore D, Wilkes J, Ames S · Journal of Pain and Symptom Management · 2026
Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case studyWong F, Ho J, Lai T, Lee L, Ho E, Lee S, Chan S, Fung C, Ho A, Li C, Li C, Chiu A, Tsui K, Lam K · Archives of Disease in Childhood · 2023
Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative StudyBrito S, Williams A, Fox J, Mohammed T, Chahin N, McCarthy K, Nubayaat L, Nunlist S, Brannon M, Xu J, Hendricks-Munoz K · Children · 2023
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal DeathLoughnan S, Boyle F, Ellwood D, Crocker S, Lancaster A, Astell C, Dean J, Horey D, Callander E, Jackson C, Shand A, Flenady V · Trials · 2022
Navigating the complex landscape of childhood dementia: caregiver psychological well-being, grief, and health system challengesNevin S, Kelada L, Elvidge K, Maack M, Hilton G, Kershaw J, Ros E, Briggs N, Farrar M, Wakefield C · Journal of Pediatric Psychology · 2026
Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practiceBroden Arciprete E, Michelson K, Feder S, Marr J, Al-Roub N, Gouda S, Jones A, Schopen A, Tapper A, Pasek T, Kelly R, Morris L, Olszewski A, Gallagher C, Taylor J, McCarthy S, Snaman J, Ananth P · Intensive & critical care nursing · 2026
Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' UnderstandingSadasivan A, Warrier M, Polavarapu K, Preethish-Kumar V, Nair M, Keerthipriya M, Vengalil S, Sagar J, Kishore T, Nalini A, Thomas P · Indian J Palliat Care · 2021
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping reviewVig P, Lim J, Lee R, Huang H, Tan X, Lim W, Lim M, Lee A, Chiam M, Lim C, Baral V, Krishna L · BMC Palliat Care · 2021
Parents' decision-making for their foetus or neonate with a severe congenital heart defectDelaney R, Pinto N, Ozanne E, Brown H, Stark L, Watt M, Karasawa M, Patel A, Donofrio M, Steltzer M, Miller S, Zickmund S, Fagerlin A · Cardiol Young · 2022
Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countriesHorey D, Boyle F, Cassidy J, Cassidy P, Erwich J, Gold K, Gross M, Heazell A, Leisher S, Murphy M, Ravaldi C, Siassakos D, Storey C, Vannacci A, Wojcieszek A, Flenady V · Birth (Berkeley, Calif.) · 2021
Pediatric palliative care parents' distress, financial difficulty, and child symptomsBoyden J, Hill D, Nye R, Bona K, Johnston E, Hinds P, Friebert S, Kang T, Hays R, Hall M, Wolfe J, Feudtner C · J Pain Symptom Manage · 2021
Prevalence and Trajectory of Household Material Hardship Among Children With Advanced CancerWright S, Paul M, Mendez S, Jones E, Lokko L, Heneghan C, Purol N, Arnold M, Aziz-Bose R, Kelly C, Pruitt S, Wolfe J, Bona K, Umaretiya P · Pediatric Blood and Cancer · 2026
Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan settingZakayo S, Njeru R, Sanga G, Kimani M, Charo A, Muraya K, Sarma H, Uddin M, Berkley J, Walson J, Kelley M, Marsh V, Molyneux S · Int J Equity Health · 2020
What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and ParentsBraybrook D, Coombes L, Scott H, Harardottir D, Roach A, Bariuan J, Ellis-Smith C, Downing J, Murtagh F, Bluebond-Langner M, Fraser L, Harding R, Bristowe K · The patient · 2025
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